Health Care Delivery and Health Policy: Meeting a Woman's Needs
One goal of CBCRP is to contribute to finding effective prevention, detection and treatment modalities for breast cancer. Achieving this goal alone, however, is not sufficient to end the breast cancer epidemic. Research has demonstrated over and over again that access to and utilization of medical interventions are not uniform in our population. Until effective prevention, detection and treatment is available and acceptable to all, breast cancer will remain a threat to the people of California. For this reason, CBCRP has committed to investing in research on health care delivery and health policy.
Conclusions
Success in increasing the portion of breast cancers that are detected at their earliest possible stage depends not only on technology, but also on the ready availability of technology in appropriate health care settings optimally located for ready access. This is especially important for the large numbers of women for whom health care access is difficult for socioeconomic and other reasons. Planning for such services depends on accurate, appropriate statistics. David J. Delgado, Ph.D., M.P.H. at the University of Southern California, undertook a study to stabilize or “smooth” race/ethnicity and age-specific incidence rates, using a statistical technique called constrained empirical Bayes (CEB). Such smoothing is useful in instances where comparisons are made based on relatively few numbers (of late-staged breast cancer) between geographic areas or time periods, and thus could be misleading (e.g., a change from 2 to 4 while very small, is a change of 100% and would show as a doubling of a rate, in this case the incidence rate—in statistical terms, such rates are considered “unstable”). Dr. Delgado used Medical Service Study Areas (MSSA) in Los Angeles County to test the usefulness of this technique.
Research in Progress
Among the findings was that among White women, there were increases in late-stage incidence among areas of low-socioeconomic status that, on average, were larger than increases observed in middle and upper socioeconomic areas when comparing time periods 1976-1983 and 1984-1991. Among Latinas, there were both increases and decreases in incidence that varied according to area. Color maps outlining the distribution of these incidence rates for 87 areas in LA county were produced, focusing on race/ethnicity, age distribution and time period. His findings could be used to augment other information to help policy makers with issues of resource allocation, program planning and especially breast cancer program evaluation.
Cyllene Morris, D.V.M., M.V.P.M., Ph.D., of the Public Health Institute, is doing research into possible factors associated with the apparent underutilization of Breast Conserving Surgery in California. Breast Conserving Surgery followed by radiation therapy is an equally effective alternative to mastectomy and is recommended for most women with stage I or II breast cancer. Nevertheless, even though Breast Conserving Surgery utilization has increased in California, only 54.1% of women with early stage breast cancer received Breast Conserving Surgery in 1995. Preliminary findings (based on all first primary breast cancers diagnosed in the state from 1988 to 1995) show that there is a clear and statistically significant trend towards the use of Breast Conserving Surgery in California. Overall during the eight-year period, 44,079 (41.8%) out of 105,466 women with breast cancer received Breast Conserving Surgery. The percentage receiving Breast Conserving Surgery increased from 27.8% in 1988 to 53.4% in 1995. Dr. Morris's analysis indicates that women of Asian or Hispanic race/ethnicity, diagnosed at a later stage, at older age, or those residing in less affluent areas were less likely to be treated with Breast Conserving Surgery. On the other hand, African-American women were the most likely to receive Breast Conserving Surgery during the study period. Despite these differences, Breast Conserving Surgery utilization is increasing in all groups examined and at a very similar rate regardless of the patient's race/ethnicity or the income level in their area of residence.
In the next year, Dr. Morris will be comparing survival for patients who had Breast Conserving Surgery to those who had mastectomy. Jay Harness, M.D. at the Northern California Cancer Center, is looking at whether the establishment of Breast Care Centers in two of the Bay Areas county hospitals can make a difference in the care received by indigent women.
While Breast Care Centers have been established and evaluated in several university-based care programs to facilitate delivery of care to women with breast cancer (and other clinical breast conditions), they have never been implemented or evaluated as a technique for improving both health care delivery and adherence to clinical recommendations by indigent women in public facilities.
In Dr. Harness' study, the experience of women with breast cancer treated at the two county hospitals which have, or are establishing, breast centers (the study hospitals) is being compared with that at two other Bay Area county hospitals which do not have such centers (control hospitals). Dr. Harness plans to use interview surveys completed by the patients, medical record data documenting clinical characteristics of the disease and clinical recommendations, and administrative data recording care received (and failed appointments) for this evaluation.
To date, the format for the initial interview has been developed, approved and pilot tested with satisfactory results, and the first post-treatment interview has been drafted. Data managers for the participating hospitals have either been hired and are now being trained, or are now going through the hiring process. Data collection from interviews of patients at all of the sites begun.
Indigent women with breast cancer have been found repeatedly to be less likely than more affluent women to receive full courses of optimal care and to be more likely to experience poorer outcomes. At least some of these undesirable differences can be traced to information and other aspects of care being delivered in ways that are inconvenient, difficult for the women to understand, or otherwise not supportive to the patients needs.
It is hoped that the results of this study will provide information to help all women receive the best possible care.
Recently Initiated Research
Three projects were funded to develop and test educational and screening programs for communities that are not served by current methods:
- women with disabilities,
- Samoan Americans, and
- older women.
Women with disabilities have been neglected in breast cancer statistics and in local, state, and national initiatives aimed at earlier breast cancer detection. Although numerous obstacles may limit the access of disabled women to screening services, nothing is known about the extent of the problem and little research has examined the issues involved. With scientific partners, Breast Health Access for Women with Disabilities (BHAWD), a coalition of community-based agencies formed in 1995 in San Francisco's East Bay region, proposes to address this research gap.
To obtain data on the extent and nature of the problem, Mary Smith, M.S., C.R.C, of the Disabled Community Health Clinic at Alta Bates Medical Center and Carol D'Onofrio, Ph.D., of the Northern California Cancer Center will undertake original analyses of data from a large national survey of the general population and a related follow-back survey of respondents with disabilities. A complementary telephone survey of 1,000 women with physical disabilities who live in Alameda or Contra Costa County will be conducted to determine whether results from the national survey describe issues at the local level, to explore barriers to screening in greater depth, and to evaluate BHAWD efforts to improve screening access. While the survey work is in progress, BHAWD partners will draft, revise and distribute a manual to share what has been learned to date from their community-based project and to advise others on how to organize similar initiatives. Throughout the project, interested individuals will be able to review findings from this project and BHAWD materials on a special website. This and other aspects of the research design are intended to strengthen and expand the BHAWD collaboration.
Pat Luce-Aoelua, M.S., of the National Office of Samoan Affairs and Shiraz Mishra, M.D., Ph.D., of the University of California, Irvine, will implement and evaluate an innovative, theory-based, culturally sensitive and linguistically appropriate breast cancer control educational program (“intervention”) specially developed for Samoan women. The intervention consists of three components: specially developed English—and Samoan—language educational materials; skills building exercises; and, interactive group discussions. The intervention, designed in four modules, address different aspects of breast cancer (i.e., risk, severity, susceptibility, screening and early detection exams). The materials and the skills building exercises necessary to model and role play new behaviors will supplement group discussions. The study will be conducted in two contiguous Southern California counties, Los Angeles and Orange. Samoan-speaking churches located in these two counties will form the study sites. This collaborative research project has several benefits. It addresses a crucial community identified cancer control need of Samoan women. Due to the unique study design, Samoan women have an opportunity to make an impact on various aspects of the study as program developers, implementers and evaluators. Furthermore, the research project will provide crucial insights into the applicability and appropriateness of the behavior change theory and research methods for this community. Lastly, the behavior change theory, educational program, evaluation protocol and associated methods will be presented in a didactic monograph designed to be used as a guidebook for other cancer control programs through relevant community-based organizations that work with minority, hard-to-reach populations.
A project by Arthur Coleman, M.D., of Bayview Hunter's Point Health Care Task Force, and Daramola Cabral Evins, Dr.P.H., of the San Francisco Department of Public Health is exploring the individual and institutional barriers that prevent women from receiving appropriate follow-up of abnormal mammograms.
